Tuesday, December 12, 2017

I read R. J. Palacio’s book Wonder—about a boy called Auggie with a craniofacial condition that elicits stares and fear—back in 2012.

In an e-mail to the author on June 29 that year, I wrote: “I loved the book. In particular, I felt the recognition by Via (Auggie’s sister) of the two ways of seeing Auggie—the one of wholeness and beauty she saw in her mind’s eye vs. the picture of horrifying defects others saw, which she eventually gets a glimpse of—was very credible and real.”I also wrote about the one part of the book that disappointed me. It happened on page 277, when Auggie’s mom refers to some Grade 7 bullies as “morons” and “imbeciles” and “cretinos.”

Reading that paragraph stopped me in my tracks. It hurt my head.

Why, in a book about accepting differences, would the respected and loving mother figure use labels for people with mental disabilities as put-downs?

Palacio responded on July 14, and apologized. “Please keep in mind that she was referring to the bullies who targeted her son, not kids with developmental challenges,” she wrote.

And yet, we know that slurs are cutting precisely because of their origins.

I don’t use the word “lame.” Decades ago, people would have used the term to describe the lop-sided gait of my son. I realize that people today mean “useless” in a generic sense when they say it. But the word’s origins made people who walk differently feel “other” and “abnormal.” That's where the word got its power and punch.

I’ve heard many parents say they read the book Wonder with their kids, and I’ve always questioned what they said when they got to that part on page 277 about the morons, imbeciles and cretinos. Did they just read over it? Did they talk about why those words negate the main message of the book?

It would be like the mom referring to a bully as a cripple, or using a racial epithet.

I haven’t seen the movie Wonder. I know parents of kids with and without disabilities love it. I know it has beautiful messages about inclusion and kindness. I'm sure it's sparking important discussions about difference.

However, when I heard that the boy playing Auggie would spend two hours a day in makeup and prosthetics to approximate the face of a child with Treacher Collins syndrome—the condition Palacio based the book on—it lost its appeal.When my son was a baby, I got involved with AboutFace in Toronto. They support kids with facial differences like Auggie’s, and their families. The variety of disorders that can affect the face, skull and neck is huge. According to a similar group in the U.S.—FACES—one in every 650 children is born with a craniofacial condition. Surely with those numbers, and with the resources behind Lionsgate Films, a boy with some kind of facial difference could have been cast to play Auggie.

According to this piece in the Daily Mail, Wonder's author Palacio “lobbied hard to have a child with Treacher Collins syndrome star in the film.”The producers did fly in a boy called Nathaniel (with an undisclosed facial difference) for a screen test, the Daily Mail reported. But, as Palacio said in the piece: “Nathaniel had physical limitations, he was hard to understand, and if you have a $20-million movie, you have to make that call.”

Isn’t that the same argument that’s made every time someone gets turned down for a job because of their disability? It would just be too hard to adapt.

If producers were concerned about the child’s speech intelligibility, they could have used captions on theatre screens (what a great way to raise awareness about accessibility?). By the end of the movie, viewers probably would have gotten the hang of it.Lionsgate uses this tagline for the film: Who gives you the courage to face the world?

In my view, the producers lacked the courage to turn the movie Wonder into the real deal by casting a boy living with a facial difference. It didn't have to be Treacher Collins. But it had to be a real facial difference.

Here’s how a couple of adults with craniofacial disorders and a parent wrote about the casting decision.

“It was devastating to realize that the directors involved with Wonder would rather cast a healthy, 'normal' looking child and put him in makeup and prosthetics, rather than cast someone who looked like me,” wrote Ariel Henley, who has Crouzon syndrome, in Teen Vogue. “I’ve gone my entire life without ever seeing someone with life experiences similar to my own represented on the big screen.”

Mike, who identifies as disfigured, and who I follow on Twitter @guysmiley22 tweeted: “It really, really, really makes me upset to see Jacob Tremblay in that mask. Like our disfigurements are a costume…As if disfigured people don’t exist.”

Sue Robins, a parent who has worked in family engagement in children’s rehab, likened the casting to hiring a regular child to play a child with Down syndrome, then putting them in intensive makeup to mimic the facial features associated with the condition.

There are plenty of child and adult actors with Down syndrome.

Doesn't imagining a child actor wearing a Down syndrome “mask” convey the absurdity of the Wonder casting choice?”There’s no reason a child with a craniofacial condition couldn’t have played Auggie in Wonder. That should have been a non-negotiable.

Because authenticity, and words, matter.Below is a photo of Simon Moore and his daughter Alice, who both have Treacher Collins syndrome. The British family was interviewed in the Daily Mail in 2015. The photo is by James Linsell-Clark.

Thursday, December 7, 2017

Mothers of children with autism reported significant drops in depression and stress and improvements in physical health after participating in acceptance and commitment therapy (ACT), according to a study published in the journal Mindfulness today.

Twenty-nine Toronto mothers filled out questionnaires before and after the workshops where they learned to accept—rather than avoid—difficult parenting emotions, think more flexibly and commit to their values. The falls in depression and stress and gains in physical health seen four weeks after the first two parts of a three-session workshop were maintained at a follow-up eight weeks after the program ended.The mothers had children with autism aged three to 22, and one-third had more than one child with autism.

More than a decade of research shows parents of kids with disabilities like autism have higher rates of stress and depression and more physical problems than other parents. But few studies have looked at interventions to help parents.The new study was conducted by clinicians and parents from the Centre for Addiction and Mental Health, University Health Network, Surrey Place and Extend-A-Family.The team concludes that ACT may be effective in improving mental and physical health in mothers of children with autism.

The groups were facilitated by one father and two mothers of children with autism who were trained to lead the intervention. BLOOM interviewed Lee Steel, who ran the groups with Kelly Bryce and Dr. Kenneth Fung.

BLOOM: What is ACT?

Lee Steel: It’s different from anything I’ve ever done, and I’ve been doing workshops for 22 years. Usually the focus is to get you to be a better parent by giving you another skill set. But ACT puts the focus on me, as a parent, and my own wellbeing. It’s about caring for the caregiver. It gives me a set of tools to go home and help me look after myself better.

At the core is the idea of psychological flexibility—so that as parents, you create a small gap between reacting and thinking about something in a more flexible way.

My son Eric is 26 now. I was feeling quite exhausted from years of advocacy. I was burning out, and reacting in ways I didn’t want to. ACT’s idea of putting the oxygen mask on myself first—rather than my child—was really applicable to me.

BLOOM: The paper lists one of the principles as acceptance.

Lee Steel: Yes, this is about being able to hold the emotions we’re feeling—including painful emotions—instead of avoiding them, pushing them down or saying ‘I shouldn’t feel this way.” It’s about holding everything with compassion. It’s accepting the way that I am, and the way that I’m feeling.

Sometimes it may be holding two emotions at the same time. Perhaps I want Eric to be independent and accepted and appreciated, but I feel really sad that it’s so hard to find services in the adult world, and to find employment that builds on his strengths.

So I simultaneously desire his independence and hold the thought that it doesn’t come easily, and I’m really sad about that. I don’t run away from those painful feelings.

I don’t do what I did when he was younger—which is to tell myself ‘I just need to apply myself more, work harder, make more calls, do more.’”

BLOOM: I can certainly relate to that feeling that somehow I can never do enough. That the world is telling me that my child is not enough, and that I’m not enough.

Lee Steel: The idea of acceptance is not only about my thoughts and emotions. It’s also about accepting my child the way he or she is. I don’t know what it’s like with other disabilities, but in the autism community, you can get a mixed message that if you work really, really hard, you can change the outcome of your child’s life. That’s an incredible burden.

I have grief now about how I can’t get all of those earlier years with my son back. Instead of slowing down and enjoying the moment, my focus then was on doing more and more and more, and working harder and harder and harder.

BLOOM: I think those ideas of ‘fixing’ disability run through our culture, which is very focused on self-improvement.

Lee Steel: Parents get into comparing their child to this fantasy outcome that isn’t even real. And that negates who my child is and who I am. ACT gets you to look at 'Whose value is this?' It may be a value that's really strong in our culture, but would this be my value?

In ACT, we ask ‘Are we treating ourselves as a problem to be solved, or as a process to be lived and appreciated?’ One slide we show asks ‘Are we a math equation or are we a sunset?”BLOOM: Another part of ACT is called cognitive defusion.

Lee Steel: That involves separating ourselves from our thoughts. I know in my experience as a parent, I often made a thought into a fact. In ACT, we learn techniques to help us hold our thoughts more lightly, instead of holding them as the truth.

ACT encourages us to see ourselves as an observer of our experience. The way Dr. Fung explains it is he holds one hand open, palm up, and puts the other hand inside of it. ‘We’re the holder, we’re not the content,’ he says. ‘Our experiences can come and go and change, but we’re the flexible holding self, rather than fusing with the contents.’

So instead of beating myself up because I wasn’t as patient as I would have liked, I can say: ‘Okay, I'm having that thought again. I’m tired. What do I need? Maybe I can go to bed earlier. Maybe I need to have a walk. Instead of judging and hurting myself more, I can be kind and compassionate with myself. If I’m compassionate with myself, that will ripple through to my child and to seeing everyone as doing the best they can.

Before ACT, when I was so hard on myself, it just made me more brittle towards other people.

BLOOM: I love that idea of being the container of our thoughts, not the thoughts themselves. How do values factor into this therapy?

Lee Steel: We do an exercise where each parent chooses four values that are important to them. Then they look at their values to see whether their actions are aligned with them. As a parent, this helped me reflect on aspects of my life that I’ve put on a shelf or forgotten about.

For example, let’s say one of my values is self-care. But I’m not doing anything about that. I’m putting everyone else first, I’m not getting enough sleep and I’m not eating right. ACT invites us to think of an action that would move us closer to that value.

We think of a value as being like a north star that can direct you. It’s not about goal setting. It’s about reflecting and asking, ‘If these are my values, are my actions moving me towards them, or away from them?’BLOOM: Why was it important to have parents of children with autism lead the workshops?

Lee Steel: It gave us a 'short-hand' early on. We didn’t have to create safety because parents knew that I got what they were talking about. You’re not talking about a script, you live it, too.

BLOOM: It's an instant credibility. The study is about parents of children with autism, but I imagine parents of kids with any kind of disability could benefit?

Lee Steel: Yes, the overlapping struggles are the same, no matter what the diagnosis. The last group we did was a mixture of parents with children with different disabilities. My hope is that this work can influence parents at a much younger age than me. I wish I’d had it much earlier on.

To learn more about acceptance and commitment therapy, watch this excellent video or contact Dr. Yona Lunsky at Yona.Lunsky@camh.ca.

Monday, December 4, 2017

Barbara Chyette holds a photo of her brother Lauren Braun, who choked to death on a hamburger on a supervised group home outing in 2014. He had no teeth and was unable to eat regular food unless it was cut into tiny pieces. Photo by John J. Kim/Chicago Tribune

By Louise Kinross'Suffering in Secret,' a Chicago Tribune investigation into the abuse and neglect of disabled adults in 3,000 state-licensed group homes in Illinois, won first prize in the 2017 Katherine Schneider Journalism Award for Excellence in Reporting on Disability.The international contest, by the National Center on Disability and Journalism at Arizona State University, is dedicated to recognizing excellence in covering disability issues.Tribune reporters Michael J. Berens and Patricia Callahan identified over 1,300 cases of documented harm since 2011 in Illinois group homes, or their day programs, for adults with intellectual and developmental disabilities.

At least 42 deaths were linked to abuse or neglect. People who were only able to eat food that was pureed or cut into tiny pieces choked to death on regular food—including a hamburger and a marshmallow. Others died from untreated bed sores and undiagnosed illnesses. One resident, accused of stealing cookies, was beaten to death by a caregiver.Berens and Callahan found a wide range of mistreatment: residents were mocked and intentionally provoked, bound with duct tape, barricaded in rooms, left in soiled clothing and denied food. They also looked at resident-on-resident assaults, in particular in homes where people with severe physical disabilities were mixed with those with histories of violence. Illinois officials told the reporters that the addresses of the 3,000 group homes, which house up to eight residents each, are secret, as are records of abuse or neglect causing death. The reporters filed more than 100 public records requests, but state files were so heavily redacted and unreliable they had to dig up information elsewhere.Caregivers, often unlicensed and untrained, earn an average of US$9.35 an hour, the investigation noted. Ironically, the reporters found the state saves US$135,000 a year when it places a person in a group home, instead of an institution. Illinois' group homes are not bound by staffing standards and other rules regulating nursing homes.Berens and Callahan are to be commended for shining a light on the personal stories of the victims and their families.They talk about their work in this fascinating panel.

Friday, December 1, 2017

The following is a found poem created this week in the narrative medicine group for parents at Holland Bloorview. A found poem is like a collage, but in this case brings together a line of writing each parent wrote in response to the prompt: "I feel joy when my child ..." In the six-week narrative group, parents write and draw about their emotional reactions to parenting children with disabilities as a way to build self-empathy, resilience and peer support. The group is made possible by the hospital's No Boundaries fund, a donor-supported grant that enables staff to bring projects that benefit clients and families to life.

I feel joy

I feel joy when my child turns towards me, lifting her eyebrows and curling her lips upwards to show me her teeth, as if she is to cry helplessly with laughter,

I feel joy when my child is happy, smiling, accepted and not judged by the society,

I feel joy when my child sings too loudly and laughs,

I feel joy when my child is happy, successful and contented, and has achieved what she aimed for,

There’s this adorable image of a toddler who appears healthy, but who, we learn, has cystic fibrosis (CF). CF is a progressive genetic disease that causes damage to the lungs and digestive system. It shortens life, although some people with the condition are living into their '40s and '50s.

His mother, Jen Gann, says she chose to have prenatal genetic testing while pregnant because “if something were wrong,” she would abort.

Due to human error, Gann never received the results, which showed she was a carrier for the CF genetic mutation. That meant her husband wasn’t advised to get tested. He also is a carrier. They found out their son Dudley has cystic fibrosis when he was a few weeks’ old.

The rest of the piece is about the intense guilt Gann experiences and her decision to sue her health providers in a case of wrongful birth.

I feel empathy for Gann. Every mother hopes she will be lucky enough to give her newborn child a clean slate at life.

Perhaps where we differ is that I don't view my child's health as an entitlement guaranteed through science. I have a son with a rare genetic condition. After he was born, I stopped counting the number of doctors who said: “But he had a normal amnio!”

Gann's piece is problematic for me in a couple of ways.

At one point she envisions telling her older son: “I’m sorry I didn’t save you, from your own life.”

Oddly, we don’t hear from any adults with cystic fibrosis in Gann’s piece, people who could speak firsthand to the complexities of their lives. Will Dudley grow to wish he were not alive? Does his opinion, when he’s able to render it, matter?

Instead, we read about a conversation Gann had with Dortha Jacobs. Jacobs established the legal concept of wrongful birth in 1975, when she sued her doctor for not diagnosing her rubella when she was pregnant with her daughter Lesli. As a result, Lesli was born with severe disabilities.

This is where I felt an editor should have applied the brakes.

Lesli isn’t offered any agency in the piece. Gann says Lesli lives in supported housing, can’t see, hear, talk or walk, has intellectual disabilities and has had over 20 surgeries. “It’s a life sentence,” is how her mother Jacobs describes her parenting experience.

I empathize with the challenges experienced by Jacobs and her daughter, and the struggles Gann anticipates with her son. But nothing about disability, or illness in the case of CF, is ever black or white.

We aren't told about how Lesli communicates. Why do we not hear from this marginalized person, or from other people with disabilities?

Gann says if she’d gotten her test results, she could have chosen to get pregnant using IVF to ensure a healthy embryo. She then asks: “Would I still have made Dudley, this exact son, only without his disease?”

Well, uh, no. Her son Dudley was the son that she would have terminated, prior to trying again with IVF. Another child would have been another child.

And that’s the sticking point, isn’t it? When a child is born with a disability or chronic health condition, it’s part of their identity. It doesn’t sit, like an inert blob, separate from the human being. It’s a part of all of their experiences, good and bad, part of the way they see the world and interact with it.

Jacobs says she’d like to replace the term “wrongful birth” with something like “parental choice.”

What about choice in how we live our lives with our children, in the here and now?

Today I listened to Keith McArthur's podcast with Fabiana Bacchini, author of From Surviving to Thriving. McArthur, who writes The Instruction Manual, is dad to a son with a rare genetic condition. Bacchini struggled with infertility, then got pregnant with twins. One child died in utero, and the other was born severely premature, with many complications, and later diagnosed with cerebral palsy.

This line from Bacchini stuck out: “You have to be making a choice everyday, a conscious choice, that this is a good journey, despite the hardness and sadness and the unknown.”

Friday, November 24, 2017

Youth who help care for a disabled or ill brother or sister were in the spotlight this week at the Young Carers Forum in Toronto, organized by The Change Foundation, an Ontario health think tank.

Alyssa Van Wynen, 21, centre above, spoke to CBC about her experience supporting her older sister Tiffany, left, who suffered a traumatic brain injury in a car accident. “With my sister, she lost out on a lot of stuff, so there’s that huge guilt factor, too,” she says in this eye-opening interview. “Because I am younger than her, I’m getting all these opportunities and stuff that she didn’t have the chance to experience.”

The Change Foundation says as many as one-third of people between the ages of 15 to 24 in Ontario act as caregivers to a family member. You can watch some of their stories here.

The London, U.K. travel company Accomable, for people who need accessibility, has been bought by Air BnB. That should mean more and better accessibility features in Air BnB listings.

Two new books caught my eye today. The first is Academic Ableism: Disability and Higher Education. That’s it, I thought! Academic ableism. That’s the concept I’ve been trying to articulate. How the culture of academia excludes people with disabilities, especially intellectual disabilities.

Here’s a short passage: “Disability has always been construed as the inverse or opposite of higher education. Or, let me put it differently: higher education has needed to create a series of versions of 'lower education' to justify its work and to ground its exceptionalism, and the physical gates and steps that we find on campuses trace a long history of exclusion.”

The book looks at how universities have helped define, study and devalue disability, but never recognized disability as a source of knowledge.

University of Michigan Press describes it thus: “The ethic of higher education encourages students and teachers alike to accentuate ability, valorize perfection, and stigmatize anything that hints at intellectual, mental, or physical weakness, even as we gesture toward the value of diversity and innovation.” Author Jay Dolmage is associate professor of English at the University of Waterloo.

Author Rebecca Fish writes: “This book is an ethnography of locked wards for women with learning disabilities. It represents just a small part of my life the year of my fieldwork...These women had been removed, sometimes a great distance, from their families and friends, and compelled to lead a restricted life under surveillance and control.” Rebecca is a researcher with the Centre for Disability Research at the University of Lancaster in the U.K.

Thursday, November 23, 2017

Koolway co-founders Jennifer Gallienne and John Cook with head cutter, sewer and pattern designer Vienna Liu.

By Louise Kinross

Jennifer Gallienne is co-founder of Koolway Sports, a premium Canadian line of coats, capes, boots and mitts designed for children and adults who use wheelchairs.

“Our outerwear is for people in wheelchairs who want to go out and enjoy life and be warm, comfortable and dry,” Jennifer says. “The reason people come to us is they can't find anything off the rack that has zippers in the sleeves—to make it easy to put on and take off—a half back for comfort, shoulder openings for chair straps, and little g-tube openings. “We work with every body shape. We work with children who use traches, and can't have fleece in the top of their coat. In one of our focus groups, a woman said that while she was running, the blanket she had on her child in the stroller kept falling off. I sat on the floor with her and drew a picture of a blanket with a zipper, like a bunting bag, and said 'Is this what you want?' That's how our product is developed—through parents, or the person in the chair, telling us what they need and want.”

Jennifer runs Koolway out of a home studio in Whitby, where she works with a team of professional industrial sewers who make the coats. “We're paying top wages and buying top-of-the line fabrics and notions from Toronto, Montreal, Calgary and Colorado. We make quality coats that last 10 years.”

Koolways sells its products worldwide, with about 75 per cent of orders coming through its website, says co-founder John Cook, who is also president. Before taking an order, Koolway asks customers to watch a video on how to take six key measurements, then confirms sizing on Skype or Facetime, so that they can see the customer’s wheelchair and make recommendations. They also do in-home fittings or group fittings at schools, Holland Bloorview, Variety Village and Whitby Ability Centre.

The adaptations in the coat are designed to reduce dressing time from 20 minutes to two minutes, John says. “For parents and school caregivers, that frees up a lot of time.” The company's most popular product is its winter coat with a detachable front and back blanket. It costs $510 to $760, based on features.

“Our main challenge is the lack of government grants for families who can't afford them,” says John. “If a family doesn't have the resources, we'll try to work with them. We'll contact third parties. Variety International recently authorized our product in some regions as eligible for funding. Sometimes we may have a family within our circle whose child has outgrown their coat, and they may ‘angel gift’ it to another family. We've reached out to Easter Seals, but they raise funds for other items.”

Koolway is partnering with parent-run foundations Three To Be and Peaceful Hearts Georgina, as well as Ability Online, to “matchmake” families who can benefit from a gently-used coat, Jennifer says. “If only people realized that a coat is a necessity.”

Jennifer began Koolway after losing her job as a graphic designer at age 40.

Like the “connector” personality described in Malcolm Gladwell's book The Tipping Point, Jennifer had a knack for knowing people, and using these connections to develop her business idea.

Jennifer's cousin was a seamstress. A parent had asked her to custom-make a coat for her son who used a wheelchair. “I knew dressing was a struggle for people with disabilities, and I said let's go into business,” Jennifer recalls.

As a graphic artist in Toronto, Jennifer had worked in the Fashion District in Toronto. “I used to sit on the street car with Agnus, who was a pattern maker for a high-end designer in my building. I picked up the phone and called Agnus to see if she would design some patterns for us. Do you remember those bug shirts that are made for people who go into the woods at their cottages? I called up the bug shirt man and picked his brain about where he manufactured his products in Toronto. I had to learn everything by trial and error and I did that, picking up the phone and asking people.”

One of the people Jennifer called was John, a neighbour who’d volunteered with Special Olympics when he worked in insurance in Calgary. “It was a Wednesday night and I was watching Dragon’s Den and I got a phone call from Jennifer saying ‘I’ve got a business, would you like to see what we’re doing?” John says. “They needed a friendly dragon and that was me.”

Recently, Koolway reached an agreement with George Brown College’s Fashion Exchange Program to have students help them plot, grade and digitize a cape, so that it eliminates cardboard patterns. “I had no idea this Fashion Exchange existed,” Jennifer says, “then I heard Matt Galloway on CBC’s Metro Morning interview the director.” The program trains students to be industrial power sewers, and includes refugees who were skilled sewers from other countries and need to learn Canadian standards. Koolway has placed an order for over 100 capes.

Jennifer describes the business as a labour of love. “We’re the custom tailor for people who use wheelchairs around the world,” John says.

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.